Palliative care physicians are taking to social media to help educate the public and other clinicians about the care they provide.
Just as some hospice nurses have used social media to inform people about end-of-life care, a handful of physicians are doing similar work for palliative care. Their shared goal is to help people better understand the nature of palliative care.
Among these pioneers is Dr. Samantha Winemaker, creator of the Waiting Room Revolution podcast and author of a book with the same title. Her clinical practice is in Hamilton, Ontario, Canada, and she has close to 64,000 social media followers across multiple platforms.
“I hope that I can help patients and families feel more empowered and maintain their agency and their connection with themselves as a unique person throughout their entire illness journey,” Winemaker told Palliative Care News. “I meet too many people at the end who feel out of control. They don’t recognize themselves, and they feel helpless. And so I’m really hoping to turn that around by helping people with skills and information right from the start.”
Winemaker “fell in love” with palliative care during her training and entered a fellowship program, she said. She now has more than 20 years of palliative care medical experience, currently providing care in patients’ homes.
Her observations of patients and families who entered her care inspired her to begin her public education work. Winemaker time and again saw patients and families come in confused and ill-informed about their illnesses, health status or the care they would receive, she told Palliative Care News.
“I have been an academic palliative care doctor. I’ve been educating health care providers behind the curtain for my whole career,” Winemaker said. “I decided to leapfrog over the health care system and go right to the consumer — patients and families — and give them the information that they needed to have a fighting chance as a new patient and family of a patient or caregiver.”
Dr. Jared Rubenstein grew up listening to stories of his parents’ experiences in health care, including those related to the end of life. His father was a critical care physician, and his mother was a social worker. Currently practicing in Houston, he decided during medical school to focus his practice on pediatric palliative care.
Rubenstein has close to 34,000 followers across multiple social media platforms. He came to the social media realm largely “by accident,” he said. The idea came following a palliative care conference in which a presenter spoke about using Twitter in medical education and public advocacy, as well as connecting with colleagues.
He said that he felt frustrated after consults in which patients expressed fear of palliative care or said they felt like their hope was being taken away, due to misunderstandings and misconceptions about their care. In response, he began developing animated videos designed to elucidate palliative care to the public and other clinicians. The first was titled, “We’re the Fire Department, Not the Fire.”
“[Social media] really quickly felt like it was a great space for learning and camaraderie and making connections with people that I wouldn’t have met in my small world otherwise,” Rubenstein told Palliative Care News. “I realized that in one or two minutes of animation and satire you can talk about palliative care and end-of-life care, and other challenging topics as well.”
During the past six years, Rubenstein has published nearly 70 videos designed to educate fellow clinicians in the continuum about palliative care, and occasionally other health care topics.
“I want people talking about palliative care. I want it to come out of the shadows,” Rubenstein said. “When people have negative conceptions of palliative care, it’s often other health care workers that are projecting that bias onto them. I really focus on the health care worker audience and wanting to move palliative care education way upstream and break the stigma and biases.”
